Your child probably will be making regular visits to doctors or other specialists to follow up on his or her treatment.
Some of the specialists who may help your child:
Neuro-radiologist
One way to monitor your child is to conduct regular MRI or CT scans. Keep your own copies of child’s scans in case your neuroradiologist or other physician needs them.
The results of these tests may be uncertain. For example, it can be difficult to distinguish recurrent tumor from scar tissue. When doctors are in doubt, they will wait, do another scan, or seek other opinions. Newer, more accurate diagnostic imaging techniques (such as functional MRIs, SPECT and PET scans) are becoming available.
Rehabilitation Therapists
Sometimes, the tumor itself or the effects of surgery or treatments may cause impairments in the use of arms or legs, coordination or swallowing. Difficulties with communication (language, speech or understanding) may also occur. Some of these effects may be temporary or other areas of the brain may take over that function. Your child may need professional therapy to become as active and independent as possible.
A physiatrist (rehabilitation doctor) can evaluate your child and make recommendations for a specific type of rehabilitation therapy. Physical therapists use motion and exercise to improve strength and movement. Occupational therapists evaluate and treat difficulties related to self care and activities of daily living.
Family members may get involved in helping implement a rehabilitation program.
Neuro-endocrinologist
The pituitary, thyroid and hypothalamus are glands in the brain that secrete hormones that control metabolism, growth and sexual development. Sometimes treatment for a brain tumor can alter glandular function and lead to medical problems, such as diabetes insipidus, early or delayed puberty, and growth problems.
A doctor who specializes in pediatric endocrinology will be able to monitor the possible effects of surgery, radiation or chemotherapy on these glands by blood tests and growth charts.
Pediatric neurologist
A neurologist is an expert in diagnosing and treating disorders and diseases of the brain and spinal cord. A pediatric neurologist typically checks reflexes, coordination, and the ability to perform fine motor skills, among other tests. The findings of these exams will help assess the need for rehabilitative treatment and enable you to seek out other specialists, if needed.
Pediatric neuro-oncologist/oncologist
These physicians are pediatricians with specialized training in children’s cancer or cancer of the brain and spine. They are uniquely trained to diagnose, treat and follow children with brain and spinal cord tumors. They often coordinate a child’s care, work with other children’s cancer centers and have access to state-of-the-art therapies and national clinical trials.
Pediatric neuro-psychologist
Brain tumors and accompanying treatment may produce either short-term or long-term problems with learning and behavior. Because some problems only become evident as the child grows older, repeated “neuropsychological” testing (every 12-18 months) is essential to monitor any changes. A neuro-psychologist has specialized training in how diseases and treatments of the central nervous system affect psychological function.
Results of these tests will be useful if you need to develop an Individualized Education Plan (IEP) with your child’s school. The pediatric-neuropsychologist should be a partner in helping with school issues and advocating for your child.
Pediatric-psychologist
These professionals are trained to deal with the emotional and behavioral aspects of physical health including pain management, eating or sleeping problems, and social adjustment. Grief and depressio, can often surface in a child diagnosed with a serious illness and should not necessarily be considered serious emotional problems. Misbehavior, and n family difficulties, can be a normal reaction to the reality of the situation.
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